He doesn’t say it, he can’t say it.
But I wish he would.
Lovence is non-verbal, and even though we did get him to say “Da-Dee” one or two times a few years back, he’s never said “Mom.”
And I long for it.
Lovence’s diagnosis is full-mutation Fragile-X syndrome, which means he is non-verbal, intellectually disabled and avoids social interaction like the plague.
Lovence doesn’t wipe his nose when it runs or his tushie when he goes potty. His skin turns white with the dryness of Colorado and his feet require lots of vaseline to keep them from cracking. When I’m tired and don’t feel like taking care of one end or the other, I scold myself. My son deserves dignity and care. He deserves a shiny face, a clean tush and soft feet.
Don’t we all?
There are days I feel frustrated with his disability, days when he moves with sloth-like slowness as I’m trying to rush out the door, days when I’ve wiped enough ends and I don’t want to do it again, or days like today – when he took the shopping cart captive and went from sloth to Mario Andretti, nearly running down three elderly ladies in the frozen aisle.
Caring for my beautiful boy humbles me. It’s a uniquely one-sided relationship. He occasionally smiles, leans into me or wraps his arms around me when he’s hoping I’ll make him another sandwich, but that’s the extent of his love language. Our relationship won’t grow much beyond these small (albeit precious) moments. Lovence won’t become a man who looks out for his mom or calls on Mother’s Day as he buys flowers for his own bride. He won’t become a dad, tossing his children in the air as they squeal with delight or call me for advice when they have a teenage tantrum. He won’t take me in his arms when I’m old and thank me for the years of keeping him clean and spraying Old Spice on those pivotal body parts.
But then again…. maybe I’m wrong. Last night as I lay in bed, I flashed forward to heaven. I imagined Lovence, handsome and strong, approaching me there. His mind fully engaged, his voice deep and resonant, his smile warm and engaging. I imagined him coming to me with a mischievous grin saying the word I longed to hear throughout his lifetime. “Hi Mom,” “and then wrapping his arms around me, “I love you.”
I’ll melt. I’ll melt like butter on a warm skillet, like ice cream on a sunny day.
But you know what will be even better? When I get to cup his face in my hands (without him jerking it away), when I get to look him right in the eyes, and say to him, “Thank you, son. In your disability, you taught me so much. Because in the quiet, when I rubbed lotion on your feet, helped you brush your teeth, dressed you in warm clothes and protected you from the unknowns that scared you… I felt God’s pleasure. I felt his smile. Maybe because God’s love for me is as out of balance as my love for you – He loves me so much more than I am able to return that love… and so passing that along did something inside of me. Loving you fundamentally changed me from the inside out. Thank you, beautiful boy, for being you.”
And maybe he’ll smile, as we are eyeball to eyeball, knowing life together wasn’t easy, but it was good in all the best ways – and we wouldn’t have had it any other way.
This morning I woke up to a few messages on my phone,,,,Jason’s bike was stolen,,,
Jason is 45, FMFX,,,verbal and pretty good functioning, I bought Jason a top brand name bike,,spent hundreds of dollars putting on this and that …it was his CAR,,,he rode to work,,groceries,,Pharmacy,,Movies,, all around town. I cried a bit cause I blame me for listening to him and giving in to this and that,,,Anyway after reading your story I realize i have nothing to complain about. Bless you and yours, Keep writing,,,Grace B